Incomplete Lissencephaly

I have a granddaughter, aged 2 10/12ths. She has been diagnosed with Incomplete Lissencephaly. Anna is unable to hold her head up, she is profoundly deaf, although there has been some talk about a 'Cochliar inplant' [sorry for the spelling]. Anna has numerous fits each day, not small ones either, some cause her to vomit, others make her tired and sleepy. She had a Nasal Gastric tube, but now has an abdominal one, a 'port' I think they call it. Her head grew 11/2 cm last month, most unusual, as the usual growth is 1/2 cm!

Anna tracks well with her eyes, and is either very happy or frustrated. My daughter takes such good care of this wee girl, but is tired. I am disabled and would like to be able to help, but cannot.

What is Lissencephaly, and what is the difference between it and Incomplete Lissencephaly.
Is there anyone on this list that has first hand 'working knowledge' of this condition?
What is the prognosis?

Hello cilycoed,
The following information would be of great help.
Lissencephaly, which literally means smooth brain, is a rare brain formation disorder characterized by the lack of normal convolutions (folds) in the brain. It is caused by defective neuronal migration, the process in which nerve cells move from their place of origin to their permanent location. It is a form of cephalic disorder.
Incomplete Lissencephaly is a rare birth defect where the a part of the brain's surface is abnormally smooth. Severity of symptoms is determined by the extent of the defect.
The surface of a normal brain is formed by a complex series of folds and grooves. The folds are called gyri or convolutions, and the grooves are called sulci. In children with lissencephaly, the normal convolutions are absent or only partly formed, making the surface of the brain smooth. Terms such as 'agyria' (no gyri) or 'pachygyria' (broad gyri) are used to describe the appearance of the surface of the brain.
Causes of lissencephaly can include viral infections of the uterus or the fetus during the first trimester, or insufficient blood supply to the fetal brain early in pregnancy.
Treatment for those with lissencephaly is symptomatic and depends on the severity and locations of the brain malformations. Supportive care may be needed to help with comfort and nursing needs. Seizures may be controlled with medication and hydrocephalus may require shunting. If feeding becomes difficult, a gastrostomy tube may be considered.
The prognosis for children with lissencephaly varies depending on the degree of brain malformation. Many individuals show no significant development beyond a 3- to 5-month-old level. Some may have near-normal development and intelligence. Many will die before the age of 2, but with modern medications and care, some children live into their teens. Respiratory problems are the most common causes of death.
The following links would be helpful.
http://www.lissencephaly.org/

Hello cilycoed,
The following information would be of great help.
Lissencephaly, which literally means smooth brain, is a rare brain formation disorder characterized by the lack of normal convolutions (folds) in the brain. It is caused by defective neuronal migration, the process in which nerve cells move from their place of origin to their permanent location. It is a form of cephalic disorder.
Incomplete Lissencephaly is a rare birth defect where the a part of the brain's surface is abnormally smooth. Severity of symptoms is determined by the extent of the defect.
The surface of a normal brain is formed by a complex series of folds and grooves. The folds are called gyri or convolutions, and the grooves are called sulci. In children with lissencephaly, the normal convolutions are absent or only partly formed, making the surface of the brain smooth. Terms such as 'agyria' (no gyri) or 'pachygyria' (broad gyri) are used to describe the appearance of the surface of the brain.
Causes of lissencephaly can include viral infections of the uterus or the fetus during the first trimester, or insufficient blood supply to the fetal brain early in pregnancy.
Treatment for those with lissencephaly is symptomatic and depends on the severity and locations of the brain malformations. Supportive care may be needed to help with comfort and nursing needs. Seizures may be controlled with medication and hydrocephalus may require shunting. If feeding becomes difficult, a gastrostomy tube may be considered.
The prognosis for children with lissencephaly varies depending on the degree of brain malformation. Many individuals show no significant development beyond a 3- to 5-month-old level. Some may have near-normal development and intelligence. Many will die before the age of 2, but with modern medications and care, some children live into their teens. Respiratory problems are the most common causes of death.
The following links would be helpful.
http://www.lissencephaly.org/

I have been a little afraid to ask my daughter to much about it, as she seems to be always so busy with Anna. Anna has started conductive therapy, and can roll on the floor now, and is also able to push herself backwards on the floor. Much the same as a 3- 6 month old.

We had wondered whether it was a genetic condition, but your posting might seem to rule that out. I am most grateful for the posting.

I have been a little afraid to ask my daughter to much about it, as she seems to be always so busy with Anna. Anna has started conductive therapy, and can roll on the floor now, and is also able to push herself backwards on the floor. Much the same as a 3- 6 month old.

We had wondered whether it was a genetic condition, but your posting might seem to rule that out. I am most grateful for the posting.

I am the mother of a seven month old with incomplete liccencephaly. For anyone who would like some hope, she is at a 9 month level already and I have heard nothing from her neurology team regarding death. Some children can lead normal lives and it can in fact get better. Before birth my daughter was diagnosed with lissencephaly and now it has changed to incomplete. Her brain is indeed developing. You must be optimistic. We are and we enjoy every day with our baby girl. Nobody can predict what will happen when it comes to matters of the brain.

I am the mother of a seven month old with incomplete liccencephaly. For anyone who would like some hope, she is at a 9 month level already and I have heard nothing from her neurology team regarding death. Some children can lead normal lives and it can in fact get better. Before birth my daughter was diagnosed with lissencephaly and now it has changed to incomplete. Her brain is indeed developing. You must be optimistic. We are and we enjoy every day with our baby girl. Nobody can predict what will happen when it comes to matters of the brain.

Our son is 21months & diagnosed with Incomplete Liss. We only received this a few months ago. We knew he was delayed, but didn't really start to worry until 15-16 months because he wasn't walking or talking. HE is now walking & does sign. He also babble a lot more. All other development is normal. He did have 2 febrile seizure, which with all of the other issues caused us to go ahead with an EEG & MRI. If you'd like to get in touch my email is ***@****

Our son is 21months & diagnosed with Incomplete Liss. We only received this a few months ago. We knew he was delayed, but didn't really start to worry until 15-16 months because he wasn't walking or talking. HE is now walking & does sign. He also babble a lot more. All other development is normal. He did have 2 febrile seizure, which with all of the other issues caused us to go ahead with an EEG & MRI. If you'd like to get in touch my email is ***@****

My daughter is 7 days old and has been diagonised with incomplete lissencephaly. Do you think that the brain develops like other normal babies? i am shattered and devastated from the time i have known this through MRI. Can they have normal lives?

My daughter is 7 days old and has been diagonised with incomplete lissencephaly. Do you think that the brain develops like other normal babies? i am shattered and devastated from the time i have known this through MRI. Can they have normal lives?

My daughter in-law is 2 years old and has been making great progress considering her condition. She is in all types of therapy that you can think of. It can be very tiring, but it's all for the benefit and development of the child. I'm very happy to read that some children reach teenage years and that makes me very hopeful. Soon and very soon I will start a profile for just for her to track her progress better and to bring awareness to mother alike. Although the doctors we take our children to are very helpful, but they are not Gods. Only the one and only can take you beloved child away. It has been our duty to give that child an fighting chance of survival. I wish you all the best and look forward to more interactions in the near future.

My daughter in-law is 2 years old and has been making great progress considering her condition. She is in all types of therapy that you can think of. It can be very tiring, but it's all for the benefit and development of the child. I'm very happy to read that some children reach teenage years and that makes me very hopeful. Soon and very soon I will start a profile for just for her to track her progress better and to bring awareness to mother alike. Although the doctors we take our children to are very helpful, but they are not Gods. Only the one and only can take you beloved child away. It has been our duty to give that child an fighting chance of survival. I wish you all the best and look forward to more interactions in the near future.

Looking for some hope for our 9 month old baby girl who has just been diagnosed with Lissencephaly. I'm not sure if it's complete or incomplete (still waiting for more details from her neurologist) but I suspect it may be incomplete as she is very vocal and happy......her vision is affected (we think she can't see well from far) and she had low muscle tone which made her delayed in her motor skills.....main thing is she's not interested in objects or reaching out for anything but she recognizes people and is very social. What can I expect? No seizures, we think she started to have little spasms (2 in the last 2 weeks that I've noticed and they don't last long). We're completely heartbroken, just need some advice on what we can look forward to. She's in therapy, our next step is to get an EEG. Doctor wasn't too optimistic, therefore it's been difficult for us to be as well. Any advice/info would be greatly appreciated.

Looking for some hope for our 9 month old baby girl who has just been diagnosed with Lissencephaly. I'm not sure if it's complete or incomplete (still waiting for more details from her neurologist) but I suspect it may be incomplete as she is very vocal and happy......her vision is affected (we think she can't see well from far) and she had low muscle tone which made her delayed in her motor skills.....main thing is she's not interested in objects or reaching out for anything but she recognizes people and is very social. What can I expect? No seizures, we think she started to have little spasms (2 in the last 2 weeks that I've noticed and they don't last long). We're completely heartbroken, just need some advice on what we can look forward to. She's in therapy, our next step is to get an EEG. Doctor wasn't too optimistic, therefore it's been difficult for us to be as well. Any advice/info would be greatly appreciated.

Thank you for that very good explanation. I must tell you that Anna is now almost 10, she goes to school, albeit a special school. There have a few times when she has had very bad seizures and on a couple of occasions needed to be hospitalised for a short time. We, my husband and I, really believe that Anna is doing so well because of the level and amazing standard of care our daughter and her husband give Anna, we're very proud of them both.

I hope this will encourage some of you, it's amazing what love can do isn't it!

Thank you for that very good explanation. I must tell you that Anna is now almost 10, she goes to school, albeit a special school. There have a few times when she has had very bad seizures and on a couple of occasions needed to be hospitalised for a short time. We, my husband and I, really believe that Anna is doing so well because of the level and amazing standard of care our daughter and her husband give Anna, we're very proud of them both.

I hope this will encourage some of you, it's amazing what love can do isn't it!

I have a granddaughter, aged 2 10/12ths. She has been diagnosed with Incomplete Lissencephaly. Anna is unable to hold her head up, she is profoundly deaf, although there has been some talk about a 'Cochliar inplant' [sorry for the spelling]. Anna has numerous fits each day, not small ones either, some cause her to vomit, others make her tired and sleepy. She had a Nasal Gastric tube, but now has an abdominal one, a 'port' I think they call it. Her head grew 11/2 cm last month, most unusual, as the usual growth is 1/2 cm!

Anna tracks well with her eyes, and is either very happy or frustrated. My daughter takes such good care of this wee girl, but is tired. I am disabled and would like to be able to help, but cannot.

What is Lissencephaly, and what is the difference between it and Incomplete Lissencephaly.
Is there anyone on this list that has first hand 'working knowledge' of this condition?
What is the prognosis?

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